[enieweler]

Grandmother has relapsed - beginning of the end?

by enieweler on Sat May 16, 2015 1:59 am

New here. Well sort of. Haven't logged onto this since site since last summer. I firstly want to apologize for my lack of knowledge on this subject of multiple myeloma.

Last year (late July 2014) my grandma was diagnosed with this terrible disease we call multiple myeloma. She was 66 when diagnosed, now 67. She has been thru chemo, August 2014 to the present. Things were looking up and she was having a grand ole' time not worrying about her cancer, not in pain, up until about a week ago.

She's now in agony. Cannot make it up the stairs anymore. She has no appetite and is high as a kite from the pain relievers, in which she has double the dosage now due to the sudden downward spiral. I've been given the impression that it's the beginning of the end.

Is it really? She was diagnosed just 9 months ago, and I see stories of 70 year olds being diag­nosed and living till their 85. Is this a regular thing that is seen in elderly patients – the fact that she's been feeling terrific and now has taken a total turn for the worst?

I really just need some closure and answers. I'm worried sick about her. Just lost 2 other grand­parents to cancer, then she gets diagnosed with myeloma and just last week another grand­parent diagnosed with cancer.

Also what are the risk factors for multiple myeloma and should I as a descendant of her be at a higher risk?

Any answers appreciated.

[Multibilly]

Re: Grandmother has relapsed - beginning of the end?

by Multibilly on Sat May 16, 2015 8:15 am

Hi Erik,

I'm sorry to hear about your grandmother's current situation.

I think most folks on this forum are wondering the following:

1. Is your grandmother under the care of a hematologist/oncologist that specializes in multiple myeloma? From your earlier post, it sounds like she is in Vancouver, BC.
    
2. What is her current multiple myeloma treatment? There are many drug combinations (or a change in dose) that can be used if one particular drug combination starts to lose its ef­fective­ness and one relapses or becomes resistant to the current disease (refractory). The selection of new drugs depends in part on what she has been on before, her current health and comorbidities, as well as things like her current genetic makeup.

[philatour]

Re: Grandmother has relapsed - beginning of the end?

by philatour on Sat May 16, 2015 9:17 am

Hi Erik,

I am so sorry to hear cancer has struck all of your grand­parents. It is a terrible disease.

I think Multibilly's response is a very good starting point. The path for myeloma for any one patient varies widely. There is a high risk group of patients (meaning their disease is more likely to respond to the treatments for a shorter time and, on average, a shorter life expectancy). That's roughly 15% of the myeloma population. Genetic screens on the bone marrow biopsy along with a few specialized tests are one of several resources to help the doctors to determine what is the best treatment. The course of declines and responses / recovery can be gradual, swift and sudden, and anything in between.

I wish you and your family all the best. As for increased risk for cancer, I suggest you ask your doctor for guidance, as there are multiple cancers involved. Hang in there.

[enieweler]

Re: Grandmother has relapsed - beginning of the end?

by enieweler on Sat May 16, 2015 2:34 pm

Thank you both for the help. Yes, she is under the care of an oncologist. I am actually going to see her today, so I will be able to provide a better update, as I haven't seen her in a little while. She's not in the hospital (that's a good thing), but she could very well end up there in the next week and then right off to the local hospice, where I spent many, many consecutive days there saying goodbye to my 2 grandparents who recently died. I don't want that to happen. The thought of her going there at 67 years of age to a place with a bunch of 80+ year olds to die just kills me.

Anyway, I will provide an update later as I am going to see her in a few hours. Fingers crossed and hoping for the best.

[Multibilly]

Re: Grandmother has relapsed - beginning of the end?

by Multibilly on Sat May 16, 2015 3:24 pm

Hi Erik,

Being under the care of an "oncologist" and one that specializes specifically in multiple myeloma are two different things. While just about any hematologist / oncologist will have a basic under­standing of multiple myeloma, there are oncologists that specialize nearly only in treating multiple myeloma and are aware of all the nuances of how to treat this very tricky disease. Most folks on this forum will stress the importance of seeking out one of these myeloma specialists.

Here is one thread that discusses some of the myeloma specialists in Vancouver:

"Hospitals in Vancouver with myeloma specialists?" (started Dec 3, 2013)

[enieweler]

Re: Grandmother has relapsed - beginning of the end?

by enieweler on Sat May 16, 2015 7:41 pm

Thank you for the link. I said I would provide an update, so here's one.

When I arrived at her house, she was barely awake, speaking in a slurred, drowsy voice and barely making any sense. It was to the point where I couldn't understand a thing she said at some points. I asked her a question, forget what it was, but she couldn't seem to comprehend anything we said.

She has a nurse taking care of her for a few days because her primary caregiver, my Aunt, is out of town. She slept well but has been sweating a lot.

A lot of these things happened when she was first diagnosed before starting chemo and up until the chemo "kicked in." I hope it's just another one of those things where she will get better in time. And to think just a week ago she was up and down like a damn yoyo ...

[Dr. Edward Libby]

Re: Grandmother has relapsed - beginning of the end?

by Dr. Edward Libby on Sat May 16, 2015 9:12 pm

Erik, I am very sorry to hear that your grandmother is not doing well.

You are right that many patients enjoy long remissions with treatment for multiple myeloma. Unfortunately, it is also true that some patients do not do as well. If this is your grandmother's first relapse of myeloma, I would be hopeful that she can regain control of the myeloma with a different treatment.

I agree that being sure that she sees a myeloma specialist could be very important and might offer her a chance to get new drugs that are otherwise not available in Canada. I would also reach out to myeloma support groups in the Vancouver area to find out what resources and support are available.

I hope that your grandmother recovers from this relapse and goes on to enjoy her life once again. Thank you for sharing your story with our readers.

Regarding your other question ... There is research demonstrating that there is a 2-3x increased risk of monoclonal gammopathy of undermined significance (MGUS) in first degree relatives of patients with multiple myeloma. A first degree relative is a family member who shares about 50 percent of their genes with a particular individual in a family. First degree relatives include parents, offspring, and siblings (brothers or sisters).

[enieweler]

Re: Grandmother has relapsed - beginning of the end?

by enieweler on Sun May 17, 2015 2:35 am

Thank you so much for the reply. I realize how important a myeloma specialist is and pray she gets one. I just got word that she has been rushed to the hospital because she was being incoherent. According to a relative at the hospital, she's getting blood work done. Then in the morning getting a scan (I don't known what type of scan).

Things aren't looking good. She went to the palliative care unit. From past experience in my family, all relatives who go to the palliative care unit always end up dead within weeks at the hospice. There's can always be a miracle, but me being a realist, I'm going to go cry now.